Conny Dechant introduces herself
I was 38 years old when, for the first time in my life, I met other people with the same condition I was suffering from.
Until then, doctors with theoretical textbook knowledge, overwhelmed relatives and self-doubt shaped my life. My disease, erythropoietic protoporphyria, was usually discussed in textbooks in a few sentences. Patients with this disease have problems with sunlight. Should wear a hat or something long-sleeved, otherwise it would start to itch. But after all, not a bad illness.
No one had described the indescribable pain that followed the itching, and continued for days. You are helplessly exposed to this pain, because no painkiller helps against it. And since this was not described anywhere, nobody believed the intensity of the pain. And at some point I stopped believing myself.
Until the day I met other patients with this disease.
And I understood that I was right, that I had not imagined the pain and its intensity, that I was not hysterical or mentally unstable. And I realized how important it is, especially in rare diseases (but also in general medicine) to integrate patient advocates as equal partners, both in the study of a disease and in the development of appropriate therapy and thus give them a sustainable voice in health care.
In Austria, I acted as one of the co-founders of the patient group EPP Austria, which has set itself the task of bringing the rare disease “erythropoietic protoporphyria” closer to the general public and advocating access to the currently only effective therapy (afamelanotide) in Austria for EPP patients.
I am very happy to be part of the IPPN since 2018 because of my expertise as a patient as well as a practicing internist and cardiologist.